Community Forums

Notifications
Clear all

Best Support  

Page 1 / 2
  RSS

BluChip
(@bluchip)
Registered
Joined: 3 years ago
Posts: 4
October 7, 2017 2:32 pm  

My daughter just had a proctocolectomy.  She received little instruction on ostomy care at the hospital.  The stoma and ostomy instructions were very rushed.  Plus, there is nothing for family members whose loved one just had this surgery.  How do we help our daughter in her adjustment to this new way of life?  BluChip


Dona liked
Quote
VeganOstomy
(@veganostomy)
Admin
Joined: 6 years ago
Posts: 2794
October 7, 2017 6:58 pm  

Hi BluChip,

Welcome to the forums.

How old is your daughter and can she manage the appliance on her own?

It's a shame that patients are sent home with little information, but I hear it a lot and hope that you find some answers here. 


BluChip and Dona liked
ReplyQuote
john68
(@john68)
Registered
Joined: 3 years ago
Posts: 1537
October 7, 2017 7:01 pm  

Hi Bluchip, go through this site watch Erics videos and information and post any questions you may have. their are lots for folk here who can share experiences and advice on many levels


ReplyQuote
Dona
 Dona
(@dona)
Registered
Joined: 3 years ago
Posts: 774
October 7, 2017 8:17 pm  

Welcome Bluchip,

Good to hear from you.

As Eric says, its pretty common to get home from surgery with only a sketchy idea of the future. Maybe you were shown how to change a bag, but not much more.  This is a wonderful resource.

Please ask questions. I wish your daughter ( and you) well. I think a lot of us here feel we are so much happier  and healthier than we were before we got this life saving surgery. Its a big adjustment, but it will get better.


LK liked
ReplyQuote
FelicityG
(@felicityg)
Registered
Joined: 3 years ago
Posts: 257
October 7, 2017 9:32 pm  

My instructions were pretty brief. It feels overwhelming when you get everything off the first time and try to remember how they said. You're on the right path asking for advice.

The blog here has been a huge help for me. Lots of advice, tips and tricks.


ReplyQuote
Zvitusk
(@zvitusk)
Registered
Joined: 3 years ago
Posts: 396
October 7, 2017 10:09 pm  

Just friends helping friends. Be strong. 

Having been frustrated by my WOCN,  who just wanted to get me out of the hospital,  I turned to an Ostomy Group that meets 1st Thursday of the month. 

Between the group and Eric,  I figured out how to live my new life. Now, I can return the favor by helping you and others get through your changed reality. 

And don't forget that "MANURE HAPPENS ".

 


ReplyQuote
BluChip
(@bluchip)
Registered
Joined: 3 years ago
Posts: 4
October 10, 2017 12:14 am  

Eric, yes, I am finding answers.  You are providing a great service. Thanks again!


ReplyQuote
BluChip
(@bluchip)
Registered
Joined: 3 years ago
Posts: 4
October 10, 2017 12:17 am  

Dona, thanks.  Yes, it is a big adjustment.  But today, for the first time in years, we were able to sit down w/our daughter and eat a meal with our daughter.  It is a simple thing but not having to she the pain, discomfort and running to the bathroom was a blessing.  I appreciate Eric and this website/youtube videos.  I appreciate the forum also.  


ReplyQuote
BluChip
(@bluchip)
Registered
Joined: 3 years ago
Posts: 4
October 10, 2017 12:22 am  

So, its not just me.  At the hospital, I felt like my daughter received the most rudimentary of instruction on changing the bag.  And, don't even mention stoma care.  I felt like the hospital was saying: "Ok, we are getting ready to discharge you.  Take this bag of stuff and good luck."  Not trying to whine but I just didn't feel there was much to the instruction we received.  OK, I got that out.  (HA)


ReplyQuote
john68
(@john68)
Registered
Joined: 3 years ago
Posts: 1537
October 10, 2017 3:27 am  

Hi Blucchip,

Great to see you on the forum and your family has been in our thoughts. I am delighted to hear you are seeing the benefits of your Daughter having had surgery. This issue of sending home the patient and their you go figure it out is terrible. Put that experience in a box, leave it on the shelf for now and the important issue is she continues to get well. From now its a question of does she have the right bag, wafer, and the rest of the kit, how is she copping working with a stoma. Getting back to every day life school, college , work all depending on what age she is. Of course you will have thought of all these things and their is help to guide her and the family on the path to making the most of this new healthy life. DO NOT be backward in asking we all had to learn and continue to do so.


ReplyQuote
FelicityG
(@felicityg)
Registered
Joined: 3 years ago
Posts: 257
October 10, 2017 8:11 am  

One thing that might be nice, if someone in your family sews, is to take her to a fabric store and select some cotton fabric she likes  and make Ostomy Bag covers. A Fat Quarter or 12 inch cut will get you enough fabric for one, more in the 12 inche cut. You can check out the thread in "The Lounge" called "I'm a Crafter." I've went pretty much crazy sewing bag covers for mine. They add bulk but when I wear a shorter tshirt they keep my bag is covered nicely and it does not look too medical.

This is the post here: https://www.veganostomy.ca/community/the-lounge/im-a-crafter/


ReplyQuote
VeganOstomy
(@veganostomy)
Admin
Joined: 6 years ago
Posts: 2794
October 10, 2017 4:32 pm  
Posted by: BluChip

But today, for the first time in years, we were able to sit down w/our daughter and eat a meal with our daughter.  It is a simple thing but not having to she the pain, discomfort and running to the bathroom was a blessing. 

It may seem like a simple thing, but believe me, you remember those moments for a very long time. They truly are special and I hope that helps to motivate you and your daughter to stay positive through this!


john68 liked
ReplyQuote
Robert
(@njewell1)
Registered
Joined: 3 years ago
Posts: 676
October 10, 2017 7:26 pm  

Hello Bluchip

Welcome to you and your daughter to the group . I'm fairly new myself . We can all relate to what your daughter and your family is going through  . I got out of hospital thinking I had a good idea of what was going on boy was I wrong . Been just over a year still learning.  Glad I joined this group I have learned a lot . Eric was a big help before I even joined I was watching his viedos . And after joining  and hearing the stories from everybody and reading the posts . All these people are great and will help you if you have any questions  . It can take some getting used to for your daughter I know it did for me . But tell her to hang in there . 


ReplyQuote
Kea
 Kea
(@kea)
Registered
Joined: 2 years ago
Posts: 2
January 16, 2018 1:04 am  
Posted by: BluChip

My daughter just had a proctocolectomy.  She received little instruction on ostomy care at the hospital.  The stoma and ostomy instructions were very rushed.  Plus, there is nothing for family members whose loved one just had this surgery.  How do we help our daughter in her adjustment to this new way of life?  BluChip

BluChip,

Just went through ileostomy with my developmentally disabled stepson, and I can say right here that the quality of prep for surgery, just to face even the most basic realities of having an ostomy, was about a 2 out of 10.  Told his mother that she should ONLY look at the Hollister website, refused to look at who the patient was, or at any point ask pertinent questions about his ability to care for his own needs, etc.

We got run around for about a month, including a scary readmission that competent Home Healthcare could have help us minimize (honestly?  can't use a thermometer correctly?  Seriously?)  I tumbled on to Vegan Ostomy's channel and have spent the last two weeks helping Mom get her bearings.

Your daughter, honestly, is probably going to need a lot of help to get her bearings.  It's ALL rushed.  It's a LOT of work, especially if she needs help sifting through the world of medical supplies and suppliers -while- recovering from surgery.  This site is a total blessing; use it.

Kea


ReplyQuote
john68
(@john68)
Registered
Joined: 3 years ago
Posts: 1537
January 16, 2018 11:28 am  

Hi Kea, welcome to Eric,s site, Everyone seems to becoming across this lack of help and information and its all over the World!! I take it you have been able to find a pouching system suited to your Stepson,s needs. Also it was very kind and thoughtful to reach out to another young person. I wish every blessing for your family and don,t be a stranger.


ReplyQuote
Robert
(@njewell1)
Registered
Joined: 3 years ago
Posts: 676
January 16, 2018 12:22 pm  

Hi Kea and welcome to this site Eric has done a good job here . And all the ostomates on here are very helpful also . Any questions you may have ask away somebody here has probably been through it .


ReplyQuote
Tony H
(@tony-h)
Registered
Joined: 3 years ago
Posts: 167
January 16, 2018 2:58 pm  

Hi Bluchip , the best support I got after coming out of hospital was from the coloplast rep , she was really helpfull and spent over an hour with me , 

I dont know if they have reps (actually a stoma nurse) where you are but it worked out well for me ,

the best info I did find was on Erics vlog  on youtube  and now his growing community forum here.

My hospital stoma nurses were very good but my local stoma nurse is very poor ,

Its funny how peoples experience s around the world seem to be very poor refarding aftercare and support .

 


ReplyQuote
VeganOstomy
(@veganostomy)
Admin
Joined: 6 years ago
Posts: 2794
January 16, 2018 3:45 pm  

Thanks for joining the forums, Kea! 

Your experience is exactly why I urge patients to connect with other patients - sometimes, what seems "normal" behavior in one hospital or in one dr's office, may not be normal at all. Recommendations may be outdated or (in your case) I believe it could also be contracts that limit which products the healthcare professionals are allowed to discuss. 

In either case, knowing that there is more to ostomy care can be a huge leap forward for many.


Robert and john68 liked
ReplyQuote
Kea
 Kea
(@kea)
Registered
Joined: 2 years ago
Posts: 2
January 16, 2018 8:38 pm  
Posted by: BluChip

So, its not just me.  At the hospital, I felt like my daughter received the most rudimentary of instruction on changing the bag.  And, don't even mention stoma care.  I felt like the hospital was saying: "Ok, we are getting ready to discharge you.  Take this bag of stuff and good luck."  Not trying to whine but I just didn't feel there was much to the instruction we received.  OK, I got that out.  (HA)

You're not whining.  You're definitely not the first.

Really, the problem is that all the cute little Patient Rights docs out there expect you to be "fully informed", while also telling everyone that they shouldn't get any information from not-approved sources.  Yet, you are then placed at the mercy of whoever is providing aftercare to give you the information you need and not decide that you can't handle it.  Here in WV, we have a medical system that when you show up with a disabled relative decides that you're not intelligent enough to handle the details.  This is why we really have to look out for our relatives and work to help people like your daughter--or they just get run over.

I trust that you have been able to ferret enough help out of the internet to help your daughter through her transition to the new life.  I sure hope you've found good stoma care professionals and have a responsive Primary.  Makes a giant difference!

We're still finding our way through the supply issue, and again, it is a case where you're supposed to go along with them to get along and put up with whatever the competence level of the system is.  I hope you've worked through the supplies issue; we're still very much in the space where we're learning what works for us and dealing with a local supplier who seems to think that customer service very secondary.

Glad to see your daughter is feeling better!
Kea


Robert and Zvitusk liked
ReplyQuote
Zvitusk
(@zvitusk)
Registered
Joined: 3 years ago
Posts: 396
January 16, 2018 10:58 pm  

What a rant . BRAVO

While each of us tried to respect the doctors and nurses to whom we entrusted our lives, somehow or another,  all they want to do is get us out of the hospital asap. 

Normally,  as soon as you have a bowel movement,  then your anesthesia has worked itself out of the system and you should be out. HOWEVER,  that's when we first get a chance to attempt to put on their bag by ourselves.  Any one successful on the first shot?

My yucky experience with the hospital WOCN wasn't successful at all. She finally resorted to threatening me with sending me to an old age nursing home if I wouldn't be successful. To this day, I have bad feelings towards her. I made a ruckus that she is to be replaced. Doctor didn't like that. Screw him too!...

I guess I am still mad. Glad that i can vent here. She never bothered to even actually look at my wound. 

I better calm down. 

I had my colonoscopy today. I think I am going to name my stoma NED. Doc said that he didn't see evidence of cancer. NO EVIDENCE OF DISEASE!  Ned.

Thank God! 


LK and Robert liked
ReplyQuote
Page 1 / 2